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Family Voices Resources
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- Fall 2018
- Fall 2019
- Fall 2020
- Fall 2021
- Fall 2022
- Issue 1 2023
- Issue 2 2023
- Issue 3 2023
- Issue 4 2023
- Spring 2018
- Spring 2019
- Spring 2020
- Spring 2021
- Spring 2022
- Summer 2018
- Summer 2019
- Summer 2020
- Summer 2021
- Summer 2022
- Winter 2018
- Winter 2019
- Winter 2020
- Winter 2021
- Winter 2022
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- 1. Introduction and Overview
- 2. Is My Child Eligible for the CLTS Program?
- 3. Completing a Functional Screen
- 4. What to Expect After a Child is Determined Eligible
- 5. Developing Your Child's Individual Service Plan
- 6. Your Child's Service Plan: Creating Outcomes
- 7. What Services Might be Covered?
- 8. Appealing a Denial
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- Your Voice Counts #1: Introduction to Family Leadership
- Your Voice Counts #2: Being an Effective Advocate
- Your Voice Counts #3: Families Need to be at the Table
- Your Voice Counts #4: Participating in a Children’s Community Options Program Advisory Committee
- Your Voice Counts #5: Joining a Committee: Thoughts for Families
- Your Voice Counts #6: Overcome Barriers and Get Involved
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- Adult Long-Term Support Programs
- Exploring Self-Employment for Youth with Disabilities
- Financial Planning for Youth with Disabilities
- Healthcare Transition Planning
- Housing for a Young Adult with Disabilities
- Introduction to Integrated Transition for Youth and Families
- Planning for Employment
- Safety Planning for Life in the Community
- Transition for Youth with Mental Health Needs
- Youth Fully Participating and Engaged in Their Community
- A "Medical Home" - What Should I Expect From My Doctor
- ABLE Accounts: What Wisconsin Families Need to Know
- Are You Tele-Ready? Making the Most of Telemedicine Visits
- Birth to 3 Program: A Family Perspective
- Community Connections and Friendship for Children with Disabilities
- COVID and School Safety: Options for Children with Disabilities or Complex Medical Conditions
- COVID Vaccines and Children with Disabilities or Complex Medical Needs
- Creating a Vision for Your Child’s Future
- Early Choices Matter: Children Building Choice-Making Skills
- Finding and Hiring Direct Caregivers
- Finding the Right Doctor for Your Child With Special Needs
- Inclusive Child Care for Children with Disabilities
- Insurance Prior Authorizations
- Katie Beckett Program: A Doorway to Medicaid for Children with Disabilities
- Making the Most of Doctors Appointments
- Medicaid and Non-Emergency Medical Transportation
- Medicaid Coverage for Diapers and Other Incontinence Supplies
- Medicaid HealthCheck "Other Services"
- Medicaid HMO Coverage for Diapers
- Medicaid Personal Care Services
- Medicaid: Appealing a Denial
- Medicaid: Explaining and Exploring Wisconsin Medicaid
- Preparing for Emergencies
- Private Duty Nursing: A Medicaid Covered Service
- Questions for My Health Plan or Insurance Company
- Respite Services for Children with Disabilities
- School and Community Based Therapy Services: Understanding Your Options and Avoiding Insurance Denials
- Self Determination and Children with Disabilities
- Summer Camps
- Supplemental Security Income (SSI) and Children with Disabilities
- Supported Decision Making for Transition-Age Youth
- Transition - Health Coverage Options for Young Adults
- Wisconsin’s Guardianship Training Requirement: What Families Need to Know
- Working with a Fiscal Employer Agent
- Working with an IRIS Consultant
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- 2017 Listening Session Report
- 2018 Listening Session Report
- 2019 Listening Session Report
- 2021 Listening Session Report
- 2022 Listening Session Report
- 2023 Listening Session Report
- 2024 Listening Session Report
- Advocacy for Change 2021, Evaluation Summary
- Advocacy for Change 2022, Evaluation Summary
- Shared Participation
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- Birth to 3 Program: Why is a Natural Environment Important?
- Birth to 3 Program: Why is Early Intervention Important?
- Care Map Instructions: Making a Care Map for Your Child
- Emergency Preparedness: Make a Plan
- Medicaid Coverage for Diapers and Other Incontinence Supplies
- Newborn Screening: What if Your Baby's Screening Results are Concerning?
- Newborn Screening: What is Genetics?
- Newborn Screening: What is Newborn Screening?
- Respite Care vs Personal Care: Is there a difference?
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Equity and Diversity
- Connecting with your Child with Intellectual and Developmental Disabilities about Racism, Police Brutality, and Protests
- Racial and Social Injustice (ep. 2)
- Structural Racism, Child Health and the Need for a Racial Equity Lens
- Understanding Racial and Social Injustice (ep. 1)
- Understanding Racial and Social Injustice (ep. 3): Mama’s Circle, Part 1
- Understanding Racial and Social Injustice (ep. 4): Dads' Round Table Talk
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Family Leadership
- Advocacy for Change Institute
- DHS: Statutory Boards, Committees, and Councils
- Find Your State Legislator
- Partners in Policymaking
- Speak Up - Finding Your Voice
- State-Level Committees and Councils
- Wisconsin Family Leadership Institute (WiFLI)
- Your Voice Counts #1: Introduction to Family Leadership
- Your Voice Counts #2: Being an Effective Advocate
- Your Voice Counts #3: Families Need to be at the Table
- Your Voice Counts #4: Participating in a Children’s Community Options Program Advisory Committee
- Your Voice Counts #5: Joining a Committee: Thoughts for Families
- Your Voice Counts #6: Overcome Barriers and Get Involved
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Family Support
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- Birth to 3 Program
- Birth to 3 Program: A Family Perspective
- Birth to 3 Program: Why is a Natural Environment Important?
- Birth to 3 Program: Why is Early Intervention Important?
- Disasters and Emergencies - Keeping Children Safe
- Finding and Hiring Direct Caregivers
- Inclusive Child Care for Children with Disabilities
- Respite Care vs Personal Care: Is there a difference?
- Respite Services for Children with Disabilities
- Tips for Keeping Your Family Healthy this Summer
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- An Introduction to Special Education
- ARC Toolkit to Telling Your Story
- Children's Resource Centers
- Community Connections and Friendship for Children with Disabilities
- COVID and School Safety: Options for Children with Disabilities or Complex Medical Conditions
- Emergency Preparedness: Make a Plan
- Finding the Right Doctor for Your Child With Special Needs
- How to Tell Your Story
- Organizations to Assist Families
- Sports and Recreation
- Starting and Sustaining Family Support Groups: Sustaining a Family Support Group
- Starting and Sustaining Family Support Groups: Virtual Support Groups
- Starting and Sustaining Family Support Groups: Where to Begin?
- Summer Camps
- Wisconsin’s Guardianship Training Requirement: What Families Need to Know
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Health Care
- A "Medical Home" - What Should I Expect From My Doctor
- Care Map Instructions: Making a Care Map for Your Child
- COVID Resource List
- COVID Vaccines and Children with Disabilities or Complex Medical Needs
- Glossary: Health Care Acronyms & Abbreviations
- Insurance Prior Authorizations
- Making the Most of Doctors Appointments
- Nursing Services for Students with Healthcare Needs
- Partnering with Your Child's Provider
- School and Community Based Therapy Services: Understanding Your Options and Avoiding Insurance Denials
- TIPS: Partnering with Your Child's Health Plan
- Youth to Adult Health Transition
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Long-Term Supports
- 1. Introduction and Overview
- 2. Is My Child Eligible for the CLTS Program?
- 3. Completing a Functional Screen
- 4. What to Expect After a Child is Determined Eligible
- 5. Developing Your Child's Individual Service Plan
- 6. Your Child's Service Plan: Creating Outcomes
- 7. What Services Might be Covered?
- 8. Appealing a Denial
- Children’s Community Options Program (CCOP)
- Early Choices Matter: Children Building Choice-Making Skills
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Medicaid
- Children's Long-Term Supports Program
- Find Your Federal Representative
- Forward Health - Health Care Programs
- Katie Beckett Program: A Doorway to Medicaid for Children with Disabilities
- Medicaid and Non-Emergency Medical Transportation
- Medicaid Coverage for Diapers and Other Incontinence Supplies
- Medicaid Coverage for Diapers and Other Incontinence Supplies
- Medicaid HealthCheck "Other Services"
- Medicaid HMO Coverage for Diapers
- Medicaid Personal Care Services
- Medicaid: Appealing a Denial
- Medicaid: Explaining and Exploring Wisconsin Medicaid
- Private Duty Nursing: A Medicaid Covered Service
- SSI Child Disability Starter Kit
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Mental Health
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Money Matters
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Recursos en español
Family Voices hojas informativas y boletines en español
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- 1. Introducción y descripción general
- 2. ¿Mi hijo es elegible para el programa de exención para CLTS?
- 3. Completar una evaluación funcional
- 4. Qué esperar después de que se determina que un niño es elegible
- 5. Desarrollando el Plan Individual de Servicios de su Hijo
- 6. Plan de servicios de su hijo: Creando resultados
- 7. ¿Qué servicios se podrían cubrir?
- 8. Apelando una denegación
- Programa de Apoyoa Largo Plazo para NiñosHojasInformativas-Enero de 2019
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- Su vos cuenta #4: Participación en el Comité Asesor del Programa de Opciones Comunitarias para Niños de Wisconsin
- Su voz cuenta #1: Introducción al liderazgo familiar
- Su voz cuenta #2: Cómo ser un defensor eficaz
- Su voz cuenta #3: Las familias necesitan estar presentes en la mesa
- Su voz cuenta #5: Únase a un comité, Ideas para las familias
- Su voz cuenta #6: Supere barreras y participe
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- WITPP 10: seguridad en una vida en comunidad
- WITPP 1: Introducción a Una Transición Integral Para Jóvenes y Familias
- WITPP 2: Jóvenes participando e involucrándose plenamente con su comunidad
- WITPP 3: Transición para jóvenes con necesidades de salud mental
- WITPP 4: Planificación para Conseguir Empleo
- WITPP 5: Programas de apoyo a largo plazo para adultos
- WITPP 6: Vivienda para un joven adulto con discapacidades
- WITPP 7: Planificación para la transición de cuidados de salud
- WITPP 8: Planificación financiera para jóvenes con discapacidades
- WITPP 9: Exploración del trabajo independiente para jóvenes con discapacidades
- Apelación de un rechazo de Medicaid o BadgerCare
- Aprovechar al máximo las citas médicas
- Asociándose con el proveedor de su hijo
- Autodeterminación
- Autorizaciones Previas del Seguro
- Búsqueda de personal para respiro y cuidados personales
- Búsqueda y Contratación de Cuidadores Directos
- Cobertura de Medicaid HMO para pañales
- Cobertura de Medicaid para pañales
- COVID y la Seguridad Escolar
- Cuentas ABLE - Lo Que Las Familias de Wisconsin Necesitan Saber
- Cuidado Infantil Inclusivo para Niños con Discapacidades
- Cuidados de relevo para niños con discapacidades
- Decisiones Hechas con Apoyo
- Eligiendo Al Doctor Correcto
- Enfermera privada: Un servicio cubierto por Medicaid
- Hogar Médico
- Katie Beckett Medicaid
- Los Servicios de Cuidado Personal Y Medicaid
- Medicaid HealthCheck “Otros Servicios”
- Medicaid: Explicando y Explorando Wisconsin Medicaid
- Medicaidy el transporte a citas médicas
- Opciones de cobertura de la salud para jóvenes
- Organizaciones de Wisconsin que ofrecen recursos para familias con niños y jóvenes con necesidades de cuidados especiales de salud
- Preguntas para mi plan de salud o compañía de seguros
- Preguntas para una agencia de salud mental
- Preparación para emergencias
- Programa desde el nacimiento hasta los 3 años: Una perspectiva familiar
- Requisito de capacitación para la custodia en Wisconsin: Lo que las familias deben saber
- Seguro de ingresos suplementario y niños con discapacidad
- Servicios do terapia
- Soñar e imaginar el futuro de su hijo
- Trabajar con un agente fiscal del empleador
- Trabajar con un Consultor de IRIS
- Vacunas de COVID y Niños con Discapacidades o Necesidades Médicas Complejas
- ¿Estás tele-listo/a?
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Telehealth
- Are You Tele-Ready? Making the Most of Telemedicine Visits
- Internet Connectivity Program in Wisconsin
- Internet Resources for Wisconsin Residents during Public Health Emergency
- Telehealth Glossary
- Telehealth Security
- Telehealth Webinar 1: Are You Connected?
- Telehealth Webinar 2: Do You Have a Device?
- Telehealth Webinar 3: Can You See Your Provider?
- Telehealth Webinar 4: Your Family's First Telemedicine Appointment
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Transition to Adult Life
- Adult Long-Term Support Programs
- Creating a Vision for Your Child’s Future
- Exploring Self-Employment for Youth with Disabilities
- Financial Planning for Youth with Disabilities
- Healthcare Transition Planning
- Housing for a Young Adult with Disabilities
- Introduction to Integrated Transition for Youth and Families
- Planning for Employment
- Safety Planning for Life in the Community
- Self Determination and Children with Disabilities
- Supported Decision Making for Transition-Age Youth
- Supported Decision Making Guide - BPDD
- Transition - Health Coverage Options for Young Adults
- Transition for Youth with Mental Health Needs
- Working with a Fiscal Employer Agent
- Working with an IRIS Consultant
- Youth Fully Participating and Engaged in Their Community
- Youth to Adult Health Transition
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Respite Services for Children with Disabilities
June 2021
What is Respite Care?
Respite care gives your family short-term relief, or time off, from direct caregiving for your child with disabilities or special health care needs. A respite care provider is a paid and trained provider for children who have complex needs, either because of a disability or a chronic condition. However, your family, friends or other paid or non-paid providers can also give you a break.
Is Respite Care the same as Personal Care Services?
No. Respite care is not the same as personal care services. Personal care services help your child with activities of daily living like feeding, toileting, bathing, dressing and preparing meals. Personal care services are covered by your child’s ForwardHealth card, while respite care, on the other hand, is covered by other programs. And, Medicaid requires that personal care services be done in the home, while respite care can be done in your home or out in the community. To learn more, see our Family Voices Fact Sheet Medicaid Personal Care Services.
How Can I Pay for My Child’s Respite Care?
State and county programs including the Children’s Community Options Program (CCOP) and the Children’s Long-Term Support (CLTS) Program have funds available for respite care. To be eligible for these programs your child needs to meet program requirements including: having a severe disability, being under the age of 21 and living in your home.
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- To learn more about the CCOP go to dhs.wisconsin.gov/ccop/index.htm
- To learn more about CLTS Waivers go to dhs.wisconsin.gov/clts/index.htm
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Your family may also qualify for some short-term or emergency respite from your local, or county, respite care program. The Respite Care Association of Wisconsin (608.222.2033 or respitecarewi.org) can help your family find programs in your area, and offers small grants to help pay for respite services for your child. In addition, the Regional Centers for Children and Youth with Special Health Care Needs may know about additional funding and/or programs in your area. However, outside funding is not available for many families so you may have to pay out-of-pocket for your child’s respite care.
A Good Idea!
To find interview questions and other tips to make sure you will hire the right person for your family go to the Respite Care Association’s KIT for Caregivers at respitecarewi.org/training-courses/kit-for-caregivers
Are there waiting lists for services from Respite Care Programs?
Yes. Many respite programs have wait lists or cannot hire enough providers to meet the needs all of the families who are eligible for respite services. Some programs make exceptions for families in crisis or who have an urgent need, so keep the respite program staff up-to-date about any changes to your family.
If you are willing to pay out-of-pocket, some respite programs may be willing to share their database of respite providers with you, even if you are still on a waiting list.
How Can I Find Respite Providers on My Own?
Think about looking outside the formal programs when you are searching for respite care. This could mean getting care for your child from extended family, friends, neighbors, or asking for help from your faith community. You should also talk to other families in your neighborhood or at your child’s school about their providers. They may know of a respite provider or even someone who simply likes to work with children.
Students also make great respite providers. Students may be willing to work a limited number of hours for free to fulfill class requirements to get “real-world” experience. If you live close to a technical college or university use the school’s job board to find students who are studying in these fields:
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- Education
- Health Care
- Occupational Therapy
- Psychology
- Physical Therapy
- Speech Therapy
- Social Work
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Does Wisconsin have Overnight Respite Care?
There are some overnight respite programs for children with disabilities and other special needs. One example is the Easterseals Respite Program. These programs are fun for the participants and give you a break from caregiving.
RESOURCES
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- Respite Care Association of Wisconsin (respitecarewi.org) helps families find providers and has materials on hiring and keeping respite providers. Grants are also available to pay for respite services.
- Easterseals Wisconsin (camp.eastersealswisconsin.com/easter-seals-camps/respite-camp) hosts respite programs and camps throughout the year.
- ARCHꟷNational Respite Network (archrespite.org/consumer-information) creates and shares resources, and hosts programs and trainings for respite providers and families.
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Still Have Questions? Need Help Finding Services for Your Child?
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- CYSHCN: Children’s Resource Centers
- Well Badger Resource Center or 800.642.7837
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Family Voices of Wisconsin, 2021© | familyvoiceswi.org
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